UOAA Discussion Board

Hi everyone,

My name is Melanie and I have been living with Crohn's disease since 2016. I am 25 years old and found out I need a resection of my ilium, where my fistula is. The fistula was discovered in 2019 and the medications are not working to get minimize or get rid of it. So, a resection it is.
I have never had surgery before, so on top of that, a surgery I have feared since I was diagnosed is now happening. I will require a stoma/bag for a minimum of 6 weeks before they can reverse it. I have so many questions and my doctors are not really giving me much information so I am seeking answers elsewhere.

1. Does the actual stoma hurt? I read that it doesn't have nerve endings but I don't know.
2. How long did you, whomever is reading this, feel like it took for you to feel yourself again? (driving, walking, being able to go out, etc)
3. Any products you recommend to help keep the stoma clean and my skin from getting irritated?
4. What does the hospital stay look like after? I read someone had a tube in their rectum for 2 days and my already heightened anxiety is continuing to climb.

I am scared beyond belief to be honest, and my symptoms and acne are acting up over the stress. Any tidbits of information or even just motivation as I prep for this would be greatly appreciated.

Thank you.

No, the stoma doesn't hurt.

I was ready to be out and about a little by the time I was allowed to drive, a week or two after surgery. Full recovery takes longer. While you're in the hospital, get up and walk as often as possible; that will speed recovery and help get things moving. Get into a walking routine when you get home if you don't already.

Water and plain soap are my staple cleaners. I use plain, unscented glycerine soap; some recommend Ivory or castille soap.
Learn about the signs of yeast infections (redness, pinpricks of color, etc.), and ask your surgeon for nystatin powder--a prescription drug to kill yeast infections--if you see the signs.

I've had a number of related surgeries, but none required a tube up my bum. Well, some tests called for such, but they didn't last two days.
Surgical drains are fairly common; a tube sticks out of your flesh, allowing excess fluid to drain out. They aren't really painful, but can be annoying.

I understand that you're anxious, but you're worrying about stuff that probably won't happen. While you're waiting for surgery, watch YouTubes about ostomies so you know what you'll be living with.
Read up on temporary ileostomies, it sounds like that's what you'll have.

I was recently diagnosed with Crohn's. Can you recommend any online discussion groups for IBS or related?

Melanie, welcome to our discussion board where you may meet many people to support you. Your own struggles with Crohn's & fistula show how resilient you are. Any apprehension you have now regarding the surgery is to be expected & hopefully dealt with by your reaching out to UOAA. Are you familiar with the main website? Here is a link: https://www.ostomy.org/ where you can find volumes of information if you click on the three horizontal bars in the upper right corner of the screen to access the main menu. This forum is only one of many avenues for help we provide. Here is another link containing updated personal stories: https://www.ostomy.org/news/ you may appreciate.
Please don't hesitate to address your questions to your surgical team who can answer questions related to your specific situation. If your surgeon seems inaccessible, ask to speak with a surgical Nurse Practitioner and I highly recommend a pre-op consultation with a Wound Ostomy Continency Nurse (WOCN) who can guide you thru the many types of supplies available specific to your own ostomy stoma.
With the ongoing pandemic affecting our medical communities, please realize it may take a bit of persistence on your part to sufficiently catch their attention. But they are there to help you personally & it is well worth the effort to make as many 'friends in the field' as possible. By reaching out to younger members of the team (residents, nursing students, etc.) they would have more time & energy to devote to your concerns & even relay them back to their superiors.
Please keep in touch with our Board & know we are here for you 24/7. Thank you for posting. And please keep us updated.

Melanie: Here is another link: https://www.crohnscolitisfoundation.org/news-events to the CCFA. Having Crohn's & especially fistulae, you may find it of interest.

Hi Melanie did your doc. say if they were going to do laparscopic surgery or fully open as lap. tends to shorten recovery time, i had reseection surgery a couple years ago due to crohns causing scar tissue and my stoma to retract, but at 68yr. old it was a little harder getting up and about but i wasnt as sick as when i got my original ostomy 35yr. ago, your young and should bounce back quicker.